RE: depressed and in pain

[Guest guest]

In a message dated 22/06/2004 18:14:15 Central Standard Time,

quaxter@... writes:

> For temporary pain relief, I've been using over the counter products " Icy

> Hot " , and also " Tylenol for Arthritis " . Both seem to be helping me for a few

> hours right now. I don't know the degree of relief it might provide for you,

> but maybe it can to some degree.

>

For myself, I find that cussing in disgust and pouting give some temporary

relief as well! (When no one is there to watch....) :>) Cary

[Guest guest]

,

This article, Understanding the Painful RA Flare, by Carol Lange, found

it at The Road Back Foundation Website http://tinyurl.com/2u8d2 is one

of my favorites since being diagnosed with RA myself.

At this time, I am not on antibiotic therapy, but I especially like the

section about emotions of chronic disease. It helped me understand

myself and my feelings, not that I relate to everything, but I was able

to have something that I printed off and shared with my family. They

understand more how I feel and if they ever start acting or implying

that they aren't supportive, it automatically reappears.

Hugs, Peggy

Understanding the Painful RA Flare

A patient's perspective

An RA patient of many years duration noticed her flares followed a

sequence which she came to recognize. This helped her realize what was

happening and to work her way through the flare. The Anatomy of a Flare

is her description of this sequence. Not everyone will follow this same

pattern, but with education and understanding you may also find a

pattern to your flares.

The second part of this article should help you understand what happens

inside your body during a flare and part three describes the emotional

side.

1. THE ANATOMY OF A FLARE

In the beginning, there is usually no conscious awareness that something

is wrong; things are just not right. Exercise becomes an effort and

muscles tend to become tight, even sore. However, the muscles still

respond to exercise and the next day, you wake up mobile and feeling

fairly well. The feeling of well-being, however, does not last.

While you are not really aware of a change, feeling good is replaced by

a nonspecific feeling of non well-being. Nothing may be obviously wrong

but you become lethargic, tired, and have difficulty sleeping. This

stage continues for a few days, varying in degree, but moving towards

feeling awful.

Sometimes, there is an occasional pain-- intermittent, usually twinges,

stabbing but quickly over. By the time you are consciously aware of not

feeling good, there is an incessant, aching pain. Besides fatigue, pain,

a feeling of malaise and swollen joints, a temperature check will

indicate a low grade temperature or the opposite -- chills.

It is extremely difficult to recognize the onset of a flare unless it is

fierce and dramatic as sometimes happens. Rather, you look back as you

begin to come out of it and feel you should have been able to spot what

was happening. It is insidious, depressing.

Depression is a very real part of the anatomy of a flare. It begins with

the feeling of non well-being. First there is simply a lessening of

enthusiasm for things normally enjoyed. As the pain and swelling

increase, mobility decreases and common daily routines become a test of

endurance, determination and consistent defeat. Now depression becomes

more easily recognized for what it is. The solution to depression is

what is hardest to continue as though nothing were wrong.

A whole new realm of pain ensues: manifestations of acute ache, burning

pain, stabbing pain and skewering pain at the same time in different

joints and muscles. You have reached the peak of the flare.

Sleep is difficult or impossible, but necessary for the healing. You

vegetate, moving only when necessary or, in contradiction, roaming

without purpose, perhaps in an unconscious effort to escape the pain.

There may be a loss of weight, loss of body to your hair, a sagging of

your facial features, an excess buildup of tartar on your teeth and a

blurring of vision. Your whole system is rebelling and under attack.

Concentration is difficult.

Finally, when you have lost all track of what is normal, the pain is not

quite so intense, a joint may begin to move more easily and swelling

decreases. There are still stabbing pains, but they have lost their heat

and the ache occasionally quiets. Movement returns slowly and with great

effort, but it returns. Now you must exercise to encourage the mobility,

to strengthen the weakened muscles.

As the flare subsides, there is almost a compulsive need to do things.

Suddenly you become aware that you are sleeping at night. The sleep may

be still broken, but now you can go back to sleep rather quickly. At

last the flare has passed.

2. THE INFLAMMATORY PROCESS

Rheumatoid or rheumatism refers to a category of diseases causing

inflammation, stiffness, and pain in joints and supporting structures.

Arthritis is the involvement of the joints and immediate surrounding

structures by disease characterized by inflammation, pain, and swelling,

often resulting in crippling deformities.

One of the most easily recognized signs of rheumatoid arthritis are

joint inflammation. The word inflammation means to set on fire and

describes the reaction of tissue to injury. Reddening, swelling, pain,

and heat are common manifestations of inflammation. Reddening results

from the increased blood flow to the area. White blood cells

(lymphocytes) are sent by the immune system to destroy the foreign

invaders and to break down and remove dead and damaged tissue. The

synovial membrane (joint lining) increases its production of fluid,

causing swelling. Pain is the body's warning to protect the injured area

and draws attention to the need to do something about it. The heat comes

from increased metabolism in the area.

There are two phases of joint inflammation: the exudative, and the

chronic. The exudative phase involves the lining layer and synovial

effusion. Cartilage can become damaged during this phase. In the second

phase, the inflammation moves into the sublining layer. In this stage,

infiltrates that are present are said [by some] to be resulting from a

cellular immune response to an antigen. A commitment to future

research in RA will be a continued attempt to identify a possible

infectious agent as the inciting antigen in this disease. It is in the

second phase that the permanent tissue destruction occurs.

Extensive research has allowed scientists to better understand the

enzymes that are released during inflammation. These enzymes, normally

stored in little packages or sacs inside the white blood cells, are

called lysosomes. Normally, release of these enzymes would help cells to

digest invading bacteria, viruses or other foreign material during the

body's fight against the invading agents. In rheumatic diseases,

however, these enzymes often spill out of the white blood cells into

surrounding tissues where they can digest cartilage, bone, protein,

ligaments, muscles or other tissues. The enzyme collagenase is

particularly damaging, because it breaks down collagen, a vital part of

the normal joint. Researchers have shown that all of these chemical

substances are present in inflamed joints. Rheumatoid arthritis can be

variable in its course. An increase in disease activity, called a flare,

can be characterized by a return or an increase in inflammation. A flare

can last for days, weeks, or months.

3. THE EMOTIONS OF CHRONIC DISEASE

Patients battling rheumatoid disease will undergo both physical and

emotional changes, but for most of those who treat the disease with

antibiotic therapy, the outcome will be very different from traditional

outcomes. The following is a chronicling of the internal, emotional

changes which take place within the course of a disease or even within a

rheumatoid flare period or perhaps with any chronic disease or illness.

Time is compressed and there may be a variation in the order of these

manifestations. There may, of course, be other manifestations unique to

the individual, since any disease is as individualized as the host or

patient in which it resides.

The onset of disease or of a flare is similar, usually beginning with

extreme fatigue. You find that you begin to sleep whenever possible,

constantly needing more and more hours of down time. As the fatigue

becomes ever more dominant in your life, an accompanying, but incipient

loss of interest in most things which were previously important-your

job, hobbies, home, spouse, and even children increases. Your focus

turns inward to a self-protected type of self-centeredness to the

selfishness of survival. There is no ability to concentrate on other

things no focus. Frequently, there may even be an irrational lashing

out, particularly at those who you love the most or at those with whom

you work, in short, a short fuse syndrome.

Eventually, accompanying the fatigue are physical symptoms such as

stiffness, swelling or pain, and a depression which deepens with the

increasing physical ramifications and the increasing puzzlement and

frustration of friends and family. This depression is both biological,

from the toxins coursing through your body, and psychological brought on

by the lack of predictability in your life. One day you wake up feeling

fairly well, anxious to catch up on things you have let slide, but just

as you get started your body gives out and you are forced back to bed.

Another time, there are plans for a family event and when it arrives you

are too exhausted to participate, or worse yet, you go to the event but

give out in the middle, ruining it for your family and yourself. Your

family and friends can't understand this apparent giving up or giving

in. Life has always been based on some degree of predictability, of

being able to say with some degree of surety, I will do this or that in

a particular time frame. Now there is only disappointment because

nothing is predictable; despair, because nothing is sure. This pushes

you further into depression. Now, there is a more or less subtle fear of

the future pervading your waking hours.

The unpredictability frequently manifests itself in a show of

indifference about consequences. It expresses a fear of hoping which is

really another type of self protection frequently accompanied by

hesitancy, loss of confidence, slowing down of motor skills and a

shortened attention span. A physical sensitivity to cold may develop.

Along with a still greater need for sleep, perhaps the inability to

sleep can even come a sagging of features particularly the face. The

result can be an emotional withdrawal from those around you and from the

demands of life. It stems from the inability to accept what the disease

is doing to you, and paradoxically may lead to fooling yourself into

pretending that everything is normal. You refuse to talk about yourself,

while in reality; you may feel that you are sitting on a time bomb not

knowing what will happen next or when it will explode.

The disease causes an embarrassment about your condition to you, your

family, and friends. For a long time, sometimes years, until the

crippling effects begin to distort your joints, you don't really look

sick. So how do you explain the physical and emotional ups and down of

what is happening to you? One day everything is apparently fine, the

next is a struggle just to function.

Yet over time, there develops a constitutional stubbornness which is

necessary to live in a world of healthy people. You push hard to cope

and hold your place in the world. You compensate by improving your

organizational skills; because you can't rely on having energy or

feeling well enough to take things as they come.

4. IMPROVEMENT

Just as these changes have gradually taken place in you as the disease

progressed, so will they gradually improve as the source of your disease

is treated and the progress of destruction is stopped. As you feel

better, you will begin taking on more responsibility in small, unsteady

steps; but making progress nonetheless. Your interest in things will

return and you'll find that you are doing more, living life in a normal

way without needing the compensations you had developed.

The bonus to this sometimes long and difficult battle is a greater sense

of self --the good and the bad, a greater adaptability and a deeper

compassion for others.

Those organizational and prioritizing skills you develop in order to

cope remain and make you more efficient and focused individual able you

to do far more with less time and energy expended. As survivors, we feel

that we are now able to leap tall buildings in a single bound -- and we

do.

[ ] depressed and in pain

Good morning, Everyone,

I'm feeling so depressed lately! I've been in pain, waiting for the

DMARD to start kicking in (could be another 2 to 8 weeks!). I honestly

don't know how to keep a positive attitude long term when dealing with

pain. And it's only been about 9 months since I've had really bad

symptoms (although I had milder symptoms longer than that.)

We're remodeling the living space above our studios and are planning to

move into them in about a week or so (it's right next door to where

we're living right now. Last week, I tiled the bathtub surround,

starting on Tuesday, then grouting and caulking over the weekend. It was

so difficult for me. Using the tile nippers and pulling the trigger on

the caulk gun just killed my hands. Using the trowel and the float to

apply the adhesive and the grout really hurt my shoulders. And all the

bending, twisting, crouching, standing, etc., hurt just about every

other joint!

I'm so used to being able to pull out all the stops and work hard to get

a job done. It's so frustrating to be limited and to have pain doing

just ordinary work. Using the vegetable peeler even hurts my hands!

I'm on sulfasalazine and etodolac now, and go back to the rheumatologist

in July. I don't know if the newer, stronger drugs would help me more,

but to be honest, we just can't afford them.

I'm frustrated, because I don't know how much pain I should just live

with. What's a reasonable expectation? It seems like 100% pain free is

not a reasonable expectation, but just what is? I hate being in pain all

the time. And what's more, I hate that I'm whining about it!

My husband has been much less than totally supportive, too. I don't know

if he really GETS the fact that I'm in pain all the time, and that

things that he takes for granted just really hurt me to do. It's hard to

find the right balance of talking to him about it. If I talk about it as

much as it's on my mind, I feel like I'm just a big crybaby whining and

complaining about the pain. But I feel like if I'm stoic and don't say

anything about it, he doesn't understand that I'm in pain and wonders

why the heck I'm not getting anything done!

How do you all maneuver through this?!

I'm so sad and frustrated,

[Guest guest]

Peggy

Thanks for sending that great description to the list. I am going to print

it out for a couple of folks myself. Cary

[Guest guest]

Awww Cary, I'm trying to " clean up my act " ! ..........jefersea

Re: [ ] depressed and in pain

In a message dated 22/06/2004 18:14:15 Central Standard Time,

quaxter@... writes:

> For temporary pain relief, I've been using over the counter products " Icy

> Hot " , and also " Tylenol for Arthritis " . Both seem to be helping me for a

few

> hours right now. I don't know the degree of relief it might provide for

you,

> but maybe it can to some degree.

>

For myself, I find that cussing in disgust and pouting give some temporary

relief as well! (When no one is there to watch....) :>) Cary

[Guest guest]

Sorry, . What you're going through is a story I've heard so many

times before and lived through myself.

Perhaps you could bring your husband to your next appointment. Some

people here have done that, and it helped.

Maybe, too, you could explain to your husband that, even though you look

the same, you aren't feeling the way you did in the past. Tell him that

you don't want to constantly complain to him, but you need him to

understand that, for now, you aren't able to easily accomplish the

physical tasks you could before. Tell him that you are optimistic that

treatment for your RA will help soon, but, for the time being, you are

often in a lot of pain.

Since there are many ways to treat RA and the associated pain, don't

give up hope. Not all of them are outrageously expensive.

There are also many programs sponsored by pharmaceutical companies that

can help you get medications at reduced cost or for free if you qualify:

HelpingPatients.org:

http://www.helpingpatients.org/index.cfm

Hang in there. Things can get better.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] depressed and in pain

> Good morning, Everyone,

>

> I'm feeling so depressed lately! I've been in pain, waiting for the

DMARD to start kicking in (could be another 2 to 8 weeks!). I honestly

don't know how to keep a positive attitude long term when dealing with

pain. And it's only been about 9 months since I've had really bad

symptoms (although I had milder symptoms longer than that.)

>

> We're remodeling the living space above our studios and are planning

to move into them in about a week or so (it's right next door to where

we're living right now. Last week, I tiled the bathtub surround,

starting on Tuesday, then grouting and caulking over the weekend. It was

so difficult for me. Using the tile nippers and pulling the trigger on

the caulk gun just killed my hands. Using the trowel and the float to

apply the adhesive and the grout really hurt my shoulders. And all the

bending, twisting, crouching, standing, etc., hurt just about every

other joint!

>

> I'm so used to being able to pull out all the stops and work hard to

get a job done. It's so frustrating to be limited and to have pain doing

just ordinary work. Using the vegetable peeler even hurts my hands!

>

> I'm on sulfasalazine and etodolac now, and go back to the

rheumatologist in July. I don't know if the newer, stronger drugs would

help me more, but to be honest, we just can't afford them.

>

> I'm frustrated, because I don't know how much pain I should just live

with. What's a reasonable expectation? It seems like 100% pain free is

not a reasonable expectation, but just what is? I hate being in pain all

the time. And what's more, I hate that I'm whining about it!

>

> My husband has been much less than totally supportive, too. I don't

know if he really GETS the fact that I'm in pain all the time, and that

things that he takes for granted just really hurt me to do. It's hard to

find the right balance of talking to him about it. If I talk about it as

much as it's on my mind, I feel like I'm just a big crybaby whining and

complaining about the pain. But I feel like if I'm stoic and don't say

anything about it, he doesn't understand that I'm in pain and wonders

why the heck I'm not getting anything done!

>

> How do you all maneuver through this?!

>

> I'm so sad and frustrated,

>

>